It began in 2002 when my partner, Blair, and I were sitting at a booth in a Toronto emergency room, singing a ridiculous song about wanting someone to come to Room 2 to talk about my poo. My fever had spiked to 104 degrees Fahrenheit. (Blair had no such excuse.) I’d been having bloody diarrhea accompanied by severe abdominal pain for six months, and I’d been sent home from three separate appointments by two different doctors who told me I was just “stressed out.” To be honest, I was afraid of getting diagnosed. I was busy going to school, working several jobs. So I was relieved when they told me nothing was wrong. At the same time, whenever I Googled “bloody diarrhea,” colon cancer always stood out. The spectre of a deathly diagnosis haunted me.

When the nurses were finally able to get a doctor to see me, he was furious. “How was she left lying here for six hours in this state? How did she get into this state?” During his outraged interrogation, four nurses and another doctor tried to find a vein hydrated enough to start an IV line. I was finally admitted, and tests were scheduled for the next day.

The diagnostic procedure involved a tube with a camera on it being pushed through my inflamed, ulcerated and bleeding anus, rectum and bowel. I watched on a TV screen as a gastroenterologist scoped my colon and the massive, pus-filled holes oozing on its sides. It was physical and psychological torture.

“Yes, yes, that’s definitely ulcerative colitis. See that, Julie—the inflammation, the ulcerations, the mucus, the bleeding? See how the disease is consistent, no patches? We’ll just take a little snip here for the biopsy. Just one more. Well, you’re doing great, Julie, just great.” I believed that if I could pretend to be the calmest, best-behaved patient ever, I could get through this experience. So I smiled weakly at her while secretly I wanted to rip the hose from my body and run screaming from the room.

As horrible as this process was, I felt relieved. I finally knew what was wrong, it had a name, and apparently it wasn’t my fault.

Over the next year, I read everything there was to read about ulcerative colitis. I tried every treatment option. Every time medical therapy failed, I would end up in hospital for days or weeks. But one statistic was continually mentioned: five per cent. I remember reading this number, and multiple specialists and surgeons repeating it. Five per cent of patients who are initially diagnosed with ulcerative colitis are ultimately diagnosed with Crohn’s disease. The significance of this information was always explained the same way: while both are a form of inflammatory bowel disease (IBD), ulcerative colitis is confined to the colon, whereas Crohn’s can affect every little bit of the digestive tract, from mouth to anus. Ulcerative colitis can be cured surgically, by cutting out the entire large intestine. Crohn’s, on the other hand, has no known cure. Two hundred thousand Canadians have IBD—the highest prevalence rate of any country in the world, according to recent studies. Slightly more than half of us have Crohn’s, the rest ulcerative colitis.

For me, surgery seemed to be the only option, at which point the five per cent statistic held more gravity than ever: Crohn’s patients can’t be cured by surgery. I clung to this tiny number and found comfort in the unlikeliness that it would include me. I went into surgery believing I would be cured.

But I wasn’t. A year after my third surgery, when I should have been enjoying my healthy, recovered body, I couldn’t digest a thing. I was inflamed, in constant pain, starving and so anemic I needed multiple blood transfusions. Every type of advanced scoping technology was used. The difference now was that I couldn’t be brave, quiet and compliant, stoically accepting the invasive testing. Every millimetre of my digestive tract was scrutinized. And yet nothing was clear.

Over the next few years, two things happened: my symptoms calmed down, and I learned to manage. I developed a rhythm of daily life that allowed me to live comfortably. I cooked things I knew I could digest, rested when I needed to, took medication from time to time. I got the odd blood transfusion. After a while I stopped noticing that my choices were even related to my disease. This was my new normal.

Then, six and a half years after my diagnosis, there was a disagreement. I met with a specialist who insisted I had a form of ulcerative colitis that recurs after surgery, while my surgeon was convinced that I had Crohn’s—that I’d had Crohn’s all along. Initially, I was shocked. Then I was devastated. After the appointment, Blair and I went to a restaurant for lunch. I remember standing in the washroom, looking in the mirror and wondering how much more of this kind of news I could possibly take. And then I realized something: whatever it is, I have it. I’ve had it for years, and I’m surviving.

Since then, I’ve shed my attachment to any diagnosis. When asked, I alternate between saying “I have colitis” and “I have Crohn’s.” No diagnosis fully explains the experience and trajectory of an illness. But maybe that’s the point. Maybe it shouldn’t be so easy to pin definitive words with unshaking certainty on these unpredictable bodies of ours. Maybe medical labels have been given too much weight and we’ve forgotten what they are: one piece of information in a large and complicated web, one clue in the puzzle of mortality that no one fully understands. Knowing this allowed me to pause in the dogged quest to figure it all out, and give myself the space to just live.

Julie Devaney is the author of My Leaky Body: Tales From the Gurney, published by Goose Lane Editions.

One thought on “Memoir: an ulcerative colitis sufferer learns that diagnoses, like illnesses, are never straightforward”

Julie, you are very brave to share a topic that most people would rather not think about, never-mind discuss openly. Your story is, unfortunately, not entirely uncommon.

I was diagnosed with Crohn’s disease at 12 years of age. While all my classmates were chatting about first kisses and getting their period, I was running to the bathroom every few minutes and having invasive tests to diagnose the problem.

I was diagnosed young and had excellent care, but back then (28 years ago) medications were limited and as a teenager I was less than religious about taking all those yucky supplements and medications. It didn’t seem right, or fair, and no one else in my family had the disease. But I was brave and spent plenty of time in hospitals having surgeries, starting treatments, having “bowel rests” with IV feeds or tube feedings.

But I was blessed too. I found my ‘calling’ in those awful times, I knew I was meant to be a nurse and I knew I would be a great one. And even though it took me a while, I managed to get my RN and then my BSc.N with honors, and found a job that I loved. Yes, I have has the worst case scenario surgery, and still require more, but it is part of my life.

I think you have to live through one of these experiences to learn to appreciate the simple things and the good days. If I was diagnosed in 2012, my prognosis and options may have been different, but I wouldn’t trade my life. I might never have found my life’s purpose in Nursing.

I agree, the diagnosis in only relative when you are in the doctor’s presence, not anywhere else. If you let your diagnosis be who you are, you will never be anything but “sick”.